Contributory Factors to Caregiver Burden in Parkinson Disease

Grúň, Daniel; Pieri, Vannina; Vaillant, Michel; Diederich, Nico J.

doi:10.1016/j.jamda.2016.03.004

Cited by 91 publications

(104 citation statements)

References 61 publications

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“…Sexual and relationship dissatisfaction among patients with PD paralleled that of their partners . The burden and increased depression in the caregiving partner can explain the sexual deterioration reported among spouses and partners of patients with PD …”

Section: Why Should Neurologists Talk About Sex With Their Parkinsonimentioning

confidence: 93%

“…The most frequent SPB is sexual desire discrepancy (SDD), and the frequent demands for sex by patients, mainly men, negatively impact their partners . SDD can be created by adverse desire changes, including (1) Restored desire after the initiation of antiparkinsonian therapy with dopaminergic agents in patients and (2) decreased desire in the partner associated with burden and depression …”

Section: Why Should Neurologists Talk About Sex With Their Parkinsonimentioning

confidence: 99%

“…43 SDD can be created by adverse desire changes, including (1) Restored desire after the initiation of antiparkinsonian therapy with dopaminergic agents in patients 44 and (2) decreased desire in the partner associated with burden and depression. 45 The most devastating SPB is hypersexuality or compulsive sexual behavior (CSB), which is reported in 1.7% to 3.5% of patients. 8 Dopaminergic treatment, particularly dopamine agonists, may induce behavioral addictions termed impulse-control disorders, including hypersexuality.…”

Section: Increased Sexualitymentioning

confidence: 99%

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The Role of Sex Therapy in the Management of Patients with Parkinson's Disease

Bronner

Korczyn

2017

Movement Disord Clin Pract

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Background: Patients with Parkinson disease (PD) and their partners report deterioration in their sexual life. Sexual dysfunction (SD), an important and often ignored aspect, is common in PD. Motor and nonmotor symptoms are involved in limiting pleasure and disturbing function. Sexual dissatisfaction is more common in men that in women. Frequently, both patients and partners have SD associated with PD, and both need suitable treatment. These issues need to be evaluated by neurologists or PD nurses and by specialized sex therapists. The objectives of this study were to describe the complexity and multidimensional nature of sexual problems in PD, enable practitioners to assess and treat sexual difficulties of their patients, and increase awareness of the role of sex therapy in the therapeutic process of PD. Methods: Based on clinical experience of over 30 years in movement disorder clinics and a review of the literature, the authors suggest practical approaches, including an "Open Sexual Communication" module, prescribing medications, and/or referring to specialists. Results and Discussion: The longitudinal nature of treating neurologic patients puts physicians in an important position to introduce sexual issues and to assess and plan the interventions and follow-up needed to ensure that sexual difficulties are resolved. The management of hypersexuality requires a thoughtful distinction between lack of opportunities for sexual expression, limited ability to perform, and true hypersexuality. Sex therapists have a major role in the assessment and treatment of the multiple factors that may underlie sexual dissatisfaction in PD, differentiating between hypersexual behaviors and other sexual preoccupation behaviors, and training the professional team.Parkinson's disease (PD) is an age-related, chronic, multisystem, progressive disorder with motor symptoms (bradykinesia, rigidity, tremor, and postural instability) 1 and highly prevalent and diverse nonmotor symptoms (NMS), which can precede the motor symptoms and may have a significant, adverse impact on quality of life (QoL). 2 NMS also contribute to caregiver strain and depression even more than motor symptoms. 3 NMS can be divided into 4 domains: (1) neuropsychiatric (e.g., depression, anxiety, apathy, dementia), (2) autonomic (e.g., constipation, orthostatic hypotension, urinary disturbances, and erectile dysfunction [ED]), (3) sleep-related (e.g., insomnia, excessive daytime sleepiness, restless-legs syndrome), and (4) sensory dysfunction (e.g., pain and changes in smell, vision, and olfaction). 2 The motor symptoms and NMS progress over time with growing physical disability and may contribute to sexual dysfunction (SD). 4 Sexual functioning is a multifaceted process that requires coordinated functioning of the person's mental, autonomic, sensory, and motor systems and depends on proper function of the neurologic, vascular, and endocrine systems, allowing sufficient blood supply to and from genital organs, a balanced hormonal system, and a healthy emotion...

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Section: Why Should Neurologists Talk About Sex With Their Parkinsonimentioning

confidence: 93%

Section: Why Should Neurologists Talk About Sex With Their Parkinsonimentioning

confidence: 99%

Section: Increased Sexualitymentioning

confidence: 99%

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The Role of Sex Therapy in the Management of Patients with Parkinson's Disease

Bronner

Korczyn

2017

Movement Disord Clin Pract

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“…The nature and symptoms associated with PD can place significant stress on the caregivers' burden. As the prevalence of PD is estimated to more than double by 2030 [6], it is important to recognize and alleviate the burden experienced by caregivers [7]. …”

Section: Introductionmentioning

confidence: 99%

Quality of Life and Caregivers' Burden of Parkinson's Disease

et al. 2017

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Aim: This study focused on the impact of the clinical features on the quality of life (QoL) of Parkinson's disease (PD) patients and of their caregivers. Methods: This study included PD patients along with their caregivers and was undertaken at the Malaysian Parkinson's Disease Association from June 2016 to November 2016. Clinical features of PD patients were assessed using the Movement Disorder Society revised Unified Parkinson Disease Rating Scale; the Hoehn and Yahr stage and the Schwab and England Activities of Daily Living Scale were used to assess the severity and the ability of PD patients respectively. QoL of PD patients was measured using the Parkinson's Disease Questionnaire-39 (PDQ-39). The revised version of the Zarit Burden Interview assessed caregiver burden. Results: At least one of the clinical features affected PD patients' QoL, and at least one of the QoL domains affected the caregivers' burden. Clinical features “saliva and drooling” and “dyskinesia” explained 29% of variance in QoL of PD patients. The QoL domains “stigma,” along with “emotional well-being” explained 48.6% of variance in caregivers' burden. Conclusions: The clinical features “saliva and drooling” and “dyskinesia” impacted the QoL of PD patients, and the QoL domains “stigma” and “emotional well-being” of PD patients impacted their caregivers' burden.

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“…The paucity of research on the impact of off periods on carepartners is an important identified gap. Carepartners play a critical role in the care of patients, particularly as the disease progresses, but this role is associated with risk of strain and implications for the caregiver's own health . The limited data suggesting that off periods increase the patient's need for physical assistance and implications for activities outside the home are consistent with a study showing that psychosocial challenges for carepartners of patients include losing valued activities, feeling housebound, and being unable to predict the patient's daily well‐being.…”

Section: Discussionmentioning

confidence: 58%

Understanding, Impact, and Communication of “Off” Periods in Parkinson's Disease: A Scoping Review

Rastgardani

Armstrong

Gagliardi

et al. 2018

Movement Disord Clin Pract

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Background Off periods are a common and disabling symptom of Parkinson's disease. We reviewed published research on understanding, impact, and communication regarding off periods to identify issues warranting further research. Methods We performed a scoping review, searching MEDLINE, EMBASE, Cochrane Library, CINAHL, and PsycINFO from 2006 to January 2018 for studies examining the impact of, understanding of, or communication about off periods. Results Twenty‐six papers met eligibility criteria. Twenty‐three studies evaluated the impact or experience of off periods in patients, three evaluated the impact upon carepartners, two papers addressed understanding of off periods, one study evaluated communication about off periods, and three studies evaluated a facilitator of communication about off periods. The findings indicate that (1) off periods are among the most troublesome symptoms to patients and that their impact on activities is broad; (2) the understanding of off periods by patients, carepartners, and nurses may be suboptimal; and (3) questionnaires hold promise as a mechanism for facilitating communication given the findings that they may enhance the detection of off periods and are rated as useful by physicians. No studies evaluated interventions to promote knowledge about off periods, and no studies identified barriers of communication about off periods. Conclusions There is a paucity of knowledge regarding the lived experiences of off periods, particularly for carepartners. Additionally, little knowledge exists in the literature regarding understanding of and communication about off periods between patients or carepartners and treating physicians. Further research is required to explore these issues to ultimately improve the treatment of off periods.

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Contributory Factors to Caregiver Burden in Parkinson Disease

Abstract: In PD, the CB is primarily dependent on patients' nonmotor symptoms. Patient care requires considerable time investment and can trigger depression in the caregiver.

Cited by 91 publications

References 61 publications

The Role of Sex Therapy in the Management of Patients with Parkinson's Disease

The Role of Sex Therapy in the Management of Patients with Parkinson's Disease

Quality of Life and Caregivers' Burden of Parkinson's Disease

Understanding, Impact, and Communication of “Off” Periods in Parkinson's Disease: A Scoping Review

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